From an anonymous PANS mom….
The details of our story are important, and yet not necessarily unique. There are too many families whose stories share the same refrain…just slightly different verses to the same song. After too many long, painful years suffering in silence, and medical and psychological professionals unable to help, our young daughter was diagnosed by an experienced neurologist with PANS/PANDAS in 2017. To give you an idea of what her symptoms look like, and from a mental/behavioral health perspective – her predominant symptoms fall under Generalized Anxiety Disorder (with Obsessive Compulsive tendencies) and Disruptive Mood Dysregulation Disorder. She had two neurologists, an immunologist, a neuropsychologist, and a family practice doctor on the team. Every medical and psychological professional we saw affectionately referred to her as “complicated.” We had “tried it all” – weekly therapy; neuropsychological testing; multiple antibiotics; oral steroids; tonsillectomy; IV solumedrol; 4 rounds of high dose IVIG; and then, Rituximab was recommended for her. Some things we tried helped; some didn’t. We would see progress and then lose it. Nothing ever seemed to ‘hold.’
As a mother, I sought out the best, most reputable information. We saw top-tier medical professionals. We reviewed the JCAP treatment guidelines for PANS/PANDAS. I became friends with parents of children with the same diagnosis, who offered not only support, but a network of ideas and education. I attended both days of the March 2018 PANS/PANDAS/AE medical conference at Columbia University, and heard from the best of the best. Something that resonated with me during both days of the conference was Dr. Swedo’s repeated discussions of Cognitive Behavioral Therapy (CBT) and Exposure Response Prevention (ERP). We had been doing CBT/ERP, so I wrote it off as “not working.” But it still stuck with me….that little voice in the back of my head.
Our daughter had now been suffering for at least 2 years, and her downward spiral was just getting worse. We continued to live in absolute hell…walking on eggshells…nothing was ever okay. However, this is where her story begins to change. A trusted PANDAs mom stepped in while we were in crisis. Her daughter was at an outpatient, all day program at Rogers Behavioral Health in Nashville, Tennessee, doing CBT/ERP, and shared that she thought it would really help our daughter. I wanted to know more but I was skeptical and unsure. Were they PANDAs friendly? Was it safe? Compassionate? Could it actually help my child…the complicated one who doesn’t fit a clear mold of anything?
Within a week, my daughter and I moved 11 hours away to Nashville, TN, so that she could begin their outpatient, all day (6.5 hours) program (called Partial Hospitalization Program – PHP, for short) for Anxiety and OCD. Rogers Behavioral Health uses a variety of approaches, but their main focus in the Anxiety/OCD program is <CBT/ERP>. I came to Rogers with low expectations but high hopes for anything actually helping our 7-year-old daughter.
We have been home for 6 months now. Our daughter’s struggles aren’t over. Her disorder and diagnoses didn’t “magically” disappear. However, our prayers were answered.
Our daughter’s symptomatology has been drastically lowered. Her happiness shines through again. We see our daughter again. She has joy. Real, honest to goodness joy! The sparkle is back in her eyes. She is able to do things that I never thought she would be able to do and overcome. She is attending school again — happily (and I’m no longer attending with her). The sleeping bag on the floor by our bed has been replaced by sleeping in her own bed every night. Her teacher told us that if she hadn’t been informed of our daughter’s struggles and time at Rogers, she would have never known because she is doing so well! She was just recognized as the “student of the month” for her classroom. She is enjoying living her life and being a kid. It’s not even the just the big things that have changed, but the little things, too. We are not walking on eggshells or living in hell every day. We aren’t crushed by her outbursts, meltdowns, and rages. She doesn’t utter things so awful that I thought my heart would truly shatter. She gets to see what it is to be a kid and not be weighed down by the burdens of what is happening in her brain.
She fights back against her anxiety every single day. She works her exposures every day still. She tracks her bans (“banned behaviors”). She sits with her tough feelings. She can express herself, take responsibility for her actions, and takes space when she needs to. Our family is forever changed. My husband and I sometimes look at each other and can’t believe that this is for real. Her change is nothing short of miraculous and it is due to effective ERP; wonderfully patient, smart, effective, and compassionate staff; appropriate medication management; a child who came and worked even when she didn’t want to or feel like it; and, God’s grace. I truly believe that Rogers and ERP changed the trajectory of her life.
Shortly after we returned home, our daughter happily remarked, “I feel like I’ve never lived this life before.” I asked her why she thinks it has changed for the better. She said, “Mama, it’s because I went to Rogers.” To see our daughter thriving and be able to access her coping skills when needed is amazing. To hear her connect the hard work that she did at Rogers to her feeling so much better: PRICELESS.
What is Cognitive Behavioral Therapy and Exposure Response Prevention?
How do I find help?
Specifically ask for Cognitive Behavioral Therapy (CBT)/Exposure Response Prevention (ERP). Ask trusted resources for a recommendation. Find local therapists or programs at https://iocdf.org/find-help/
Is ERP research based?
ERP is the “gold standard” treatment for OCD. https://childmind.org/guide/parents-guide-to-ocd/treatment-for-ocd/
I’m interested in talking with staff from Rogers Behavioral Health – how do I do that?
Call their toll free nationwide number (800.767.4411) or their local offices to ask questions or request an intake appointment (no cost).
Where is Rogers Behavioral Health located?
They have multiple locations, with more locations opening each year. Each location offers different programs/age ranges/diagnoses. https://rogersbh.org/locations